Tales from my eventful and ongoing journey as a Generation X caregiver for my father and as an advocate for Lewy Body Dementia caregivers.

Monday, November 10, 2014

Books, Livres, Libros, Buch!

I’m always
on the lookout for the latest book about caregiving, Lewy Body dementia, any
other dementia, or end of life in an effort to find something good I can
recommend to my caregivers. Following are three of the latest I’ve read.

Activities to Do with Your Parent
Who Has Alzheimer’s Dementia, Judith A. Levy: I was contacted by this author and
asked to read her book so I ordered it and read it. Levy cared for her mother
with Alzheimer’s so she knows what she’s talking about, and she inserts little
stories about her experiences. She has really focused on interacting with the
care receiver, however, which I really liked.

The
activities range in nature from things to do with your hands to more active
possibilities, to things you do on behalf of your care receiver like reading to
them, and could be tailored to your own particular situation. What’s more, she
has provided space in the book for notes on the success of each activity, how
and when it was best to do them, and ways you might have tweaked the activity
to work for you, but wouldn’t necessarily remember the next time.

Coming
from someone who wanted to interact with her care receiver but didn’t always
know how, I recommend this highly! I remember spending time with Dad and not
knowing what else to do with him! Exhausted from walking, tired of spending
time in museums and malls and parks – there were just times when I didn’t know
how to keep him entertained. I would have used many of these suggestions.

Levy has
managed to come up with a huge variety of activities to do with your care
receiver so you can continue to interact with them, spend valuable time with
them, and make them feel engaged and loved. I think this book is just great!
****

Sundown Dementia, Vascular
Dementia, and Lewy Body Dementia, Lyndsay Leatherdale: When I first saw this one on
Amazon I was excited. Sundowning - a syndrome that happens in the late
afternoon, where people with dementia become agitated, confused, angry, or may
start to act out, lash out or behave strangely – can be so exhausting for
everyone involved that any explanation or help in how to deal with it is
welcome. In addition, any new information about Lewy Body dementia is a good
thing.

This book
was written by 20-year-old Lindsay, using her own experiences with her
grandmother, in an effort to help other caregivers. While I applaud Lyndsay’s
efforts, the book seemed a little simplistic and didn’t really seem to have
much new information. Her advice on ways to deal with sundowning were good, but
have also been given in other books and on forums. It was pretty
straightforward, however, and a quick read, so might be a good choice for a new
caregiver who didn’t have much time. **

Slow Dancing with a Stranger, Meryl
Comer: This is
really just a memoir – no how-to’s and advice here, really, but it is a good
one. It is heart-breaking at times, to read what Comer and her husband went
through as he was slowly stricken with Early On-set dementia. What compounded
the problem was the fact that this happened twenty years ago, when dementia was
still known as senility, and few people knew that it could strike someone
younger.

Comer was
forced to give up her own work to become her husband’s full time caregiver. He
was a doctor of some reknown and no little intelligence and to have to witness
his degeneration was terrible for her. However, the sacrifices she made on his
behalf were considerable – and heroic. I think this would be a good read for
potential caregivers, because she details the mistakes that they made and the
things that she would have done differently, i.e, better financial planning,
better communication between them about finances, better understanding of
medical, care, and end-of-life wishes.

It is a
little weird to be grateful for the advances in understanding and awareness of
all types of dementia that have occurred just in the last ten years; especially
when we acknowledge that many of them came on the backs of caregivers and
dementia sufferers. But we really should be thankful for the fact that it’s not
nearly as bad as it used to be – and there are measures being taken. It’s also
not a very long book, and is entertainingly written. ***

Please visit my new blog! You may also visit my website for further resources and to contact me.

Click Here to Buy the Book!

30% Goes to the LBDA.

Teepa Snow

Teepa is the reigning queen of how to interact with those who have dementia and make your life as a caregiver easier and smoother. More importantly, she teaches us how to give our care receiver the best, most comfortable, life possible.

LBD Caregiver Link

LBD Caregiver Link

Toll-free LBD Caregiver Link – 800.539.9767

LBD families and caregivers can connect directly on a regional basis, through the LBD Caregiver Link, featuring “Lewy Buddies.” “Lewy Buddies" are experienced LBD caregivers who share their time and experience with LBD families by:

vListening compassionately and confidentially to the challenges of LBD families and sharing their own personal experience with LBD

vOffering emotional support

vReferring families to additional LBDA programs and services as appropriate for their needs.

While Lewy Buddies are not able to provide medical advice and are not medical professionals, they are typically well informed about LBD through their personal experiences and volunteer training with LBDA. They may also be able to help identify information and community resources concerning the diagnosis and care of a person with Lewy body Dementia.

When calling or emailing the LBD Caregiver Link, you will speak with an experienced caregiver who can provide information on LBD and who can also share their personal experience and compassion.Please leave a message and an LBDA volunteer will return your call within 24-48 hours.

"Our deepest calling is to grow into our own authentic self-hood, whether or not it conforms to some image of who we ought to be. As we do so, we will not only find the joy that every human being seeks -- we will also find our path of authentic service in the world." Parker J. Palmer

FEATURING:

Toll-Free Hot Line at the AFA (Alzheimer's Foundation of America)

1-866-232-8484

Compassion. Knowledge. Care. That's what AFA's toll-free hot line delivers. When you reach out to us, licensed social workers and other professionals knowledgeable about Alzheimer's disease and related illnesses will answer your call. They will respond to your questions and direct you to appropriate local resources to meet your needs. No question is too small; no concern is too insignificant.

AFA's toll-free hot line provides information, counseling by licensed social workers and referrals to community resources across the nation.

The hot line operates during regular business hours—Monday through Friday, 9 am to 5 pm (ET). During these hours, social workers are available by phone, as well as via Skype and live chat; to connect via Skype and live chat, click here. At all other times, please leave a message and we will return your call. To ask a question via e-mail, click here. If your situation is an emergency, please dial 911 when appropriate.

***************************Care Connection Teleconferences with the Alzheimer's Foundation of America.

Care Connection Teleconference

********************************

Full Life Care

http://www.fulllifecare.org/

Welcome to Full Life Care – formerly ElderHealth Northwest. Full Life helps adults of all ages with chronic illnesses, physical or developmental disabilities. We are a not-for-profit organization dedicated to improving people’s lives and supporting caregivers. Since the 1970s, we have helped thousands of individuals preserve their dignity and avoid living in a nursing home or in isolation.

This is a great organization. My Dad visited them for years and got a lot of support through their Men's Support Group. I highly recommend them for help and support of your loved one.

*******************************Check out Seattle's Grief center if you or someone you know needs a little extra support during a tough time. http://www.healingcenterseattle.com/ *******************************What is the Helpline?

The Alzheimer's Association's Helpline is a toll-free number that you can call 24-hours a day, 7 days a week to get information about Alzheimer's disease. Through our National office, we have the ability to serve individuals in 140 different languages by accessing translation services.

Call 800.272.3900 to speak with a trained Helpline specialist who will provide emotional support and appropriate referrals to local resources in the 23 counties served by the Association. All calls are confidential.

About Me

I'm a writer, caregiver advocate, hospice/bereavement counselor and care manager for my father, who suffers from Lewy Body Dementia. I think it's important to talk about caregiving from my point of view as a member of Generation X. I also think it's important to spread the word on what Lewy Body dementia is, and how to deal with it effectively.
Some names, dates, details have been altered due to memory discrepancies, to maintain privacy, and to ensure narrative flow.